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“Patient-centred” – what does it mean and how achievable is it?

“Patient-centred care” is on everyone’s lips these days. But, do we all agree what it is and when it has been achieved? And does patient centredness create new ethical dilemmas for patients and providers?

The University of Toronto Joint Centre for Bioethics (JCB) and Healthy Debate are partnering to explore some of the practical and ethical implications of patient-centredness.

We would like to explore two major themes: i) what patient-centredness means to different people within health care; and ii) how we can use examples of ethical dilemmas around patient centredness to understand the different perspectives and get closer to the goal we all want – a health care system that serves the needs of patients.

Patient-centredness varies, depending on one’s perspective

Patient-centredness can mean different things to different people.

For patients, it can mean that the care they receive reflects their values and preferences and they feel they are treated as a whole person.

Clinicians may see patient-centredness as advocating for their patients to ensure their needs are met.

Organizations within health care, such as family health teams and hospitals, may consider themselves patient-centred when they involve patients on committees and use the results of patient satisfaction surveys to inform their decisions.

Policy makers sometimes describe patient centredness as a measure of health system performance or as a principle to strive for when designing health services within the budgets they have been allocated.

Public health practitioners may feel that patient-centredness should be less concerned with meeting the desires of individual patients and more concerned with addressing the social determinants of health, which they argue would prevent many citizens from becoming patients in the first place.

These are all legitimate views. Let us know what patient-centredness means to you.

Ethical dilemmas associated with patient-centredness

Dilemmas around patient-centredness arise all the time in health care but tend not to be acknowledged. Here are two examples:

Sick, frail patients are lined up in stretchers in the corridors of the emergency department because there are no beds in the hospital. The hospital administration pressures doctors to discharge admitted patients as quickly as possible to free up beds. A doctor discharges an 85 year old recovering from pneumonia back to live with his 84 year old wife with early dementia, even though the doctor realizes that the homecare supports they need aren’t yet in place. What is patient-centred for the patient waiting for a hospital bed is clearly not patient-centred for the gentleman recovering from pneumonia.

A patient with advanced breast cancer who is not responding well to chemotherapy wants to try high dose intravenous vitamin C, administered in a complementary medicine clinic, and would like her doctor to order the blood work that the clinic requests so that it is paid for by the provincial health insurance plan. Her physician says he has reviewed the evidence and has found that the treatment does not appear to be effective, and has rare but potentially serious side-effects. The patient understands the risks but says she would like to try it – nothing else seems to be working anyway. He says he can’t be involved in facilitating a treatment that he doesn’t think is in her best interests. Does patient-centred care mean agreeing to what patients want even if it runs counter to clinical judgment?

Over to you: patient-centredness in your voice

The partnership between the Joint Centre for Bioethics and Healthy Debate over the next year will involve a combination of lectures and symposia hosted by the JCB, and articles and on-line discussions on Healthy Debate. We haven’t sorted out the details and are hoping that you will help us out.

What does patient-centredness mean to you? No matter what perspective you bring – patient, caregiver, clinician, policymaker, citizen – we’d like to hear from you. Tell us how you define patient-centredness. Do you think there are limits to how patient-centred the system should be? Tell us also about where you have observed or experienced ethical dilemmas associated with achieving patient-centred care. If you choose to share your views on Twitter, please use the hashtag #PCCethics so we can be sure to see your tweet. Your comments and experiences will inform how the JCB and Healthy Debate explore this issue over the next year.

Jennifer Gibson is Director of the University of Toronto Joint Centre for Bioethics. Andreas Laupacis is a physician at St. Michael’s Hospital in Toronto, and editor-in-chief of Healthy Debate.

Enter the debate: reply to an existing comment

20 comments

Donna ThomsonJanuary 5th, 2015 at 10:39 am

I am so pleased that you are exploring the various meanings in ‘patient centred care’. I am a caregiver, author and speaker on issues related to the ethics and economics of family caregiving. In my experience, patient centred care at its worst has meant that my son was asked to direct his own care, despite being non-speaking and having a developmental disability in addition to complex medical needs. In practicing patient centred care, some medical professionals have not administered treatment based on a perception that my son ‘didn’t seem to want it’. At best, patient centred care has precipitated a discussion on whole family decision-making (that includes my son) around a palliative approach vs further invasive, but possibly helpful treatments. It has also been our family experience that family centred care has been co-opted by some hospitals to mean ‘family do it yourself care’ (ie. ‘you know your son best, so you can change his sheets and give his medication’). It is high time for a public discussion with the objective of achieving broad consensus on the meanings of patient centred, patient/systems centred, family centred and network centred care. Furthermore it is my opinion that there is a place for a variety of approaches along the continuum of care – the ICU requires a different focus from home and community care.

“Patient-centred” is a meaningless piece of jargon that is used to appeal to the public. As outlined in the article, there are so many potential meanings to this term that it cannot mean anything on its own.

To attempt to define “Patient-centred” in multiple ways by different people indicates it cannot be used without full explanation of the context.

“Patient-centred” is very much like the phrase “Right treatment at the right time at the right place”. What is “Right” depends on who you are and what your perspective and goals are. These will vary and create a very long spectrum.

Many terms in health care transformation like “Patient-centred Care”, “Seamless Continuum of Care”, and “Right treatment at the Right time” are used to appeal to the public. They have no true meaning but they do sound good.

1. Plain-language medical and health terminology that’s understood by all:
It’s not just us patients confounded by medical jargon: As Advisor on the Health Canada/Saint Elizabeth Initiative: ‘Client-centred Care: Future Directions for Policy and Practice in Home and Community Care’ , when findings were presenting at health conferences, I was gobsmacked that provider specialties (doctors, nurses, social workers, physio/occupational therapists etc) don’t even understand each other’s jargon. #fail http://www.ncbi.nlm.nih.gov/pubmed/21899399

2. Interprofessional communication, collaboration and mutual respect (at least the appearance of)
What are we patients to do when our healthcare professionals don’t or can’t communicate or work together, and who shatter our fragile sense of well-being when they disrespect each other

When invited recently to put patient perspective into a Physician’s Leadership Summit, participants discussed leadership implications in a scenario where a doctor derides a nurse in public. For patients, this can be confidence-busting behaviour.

About your examples: I can only comment on the second – because that’s the exact situation a (late) beloved family member was in, and her doctor refused her request.

In my opinion this situation begs the question: “Whose health is it anyway?”
The reluctant doctor should honour his patient’s request while documenting his recommendation.

Congrats for opening up these two words to the world to dice, slice, explore and enrich.

im a registered massage therapist. thank you for this fantastic exploration of this term. i personally use client-centered, because i dont have the connection with physicians and physios to participate in a circle of care where using the word patient might be more appropriate. (thought i wish i did)

what it means to me is firstly, not imposing my goals and ideals onto my client and allowing them to determine what their goals are in visiting my practice. second it means catching any red flags in my history taking and assessment that require me to refer to a physician. thirdly, it means explaining what i want to do, why, and how it relates to their goals in order to get informed consent. Finally and most importantly it means not making unsupportable claims about the effect of my work. all of this has the intention of creating a strong therapeutic alliance, which is essential to exploiting the meaning response to positive effect, and in itself has been shown to lead to reduced pain.

it also creates a fine distinction in marketing. i cannot market myself as something people need. i must market myself as available if needed. which leaves the decision as to whether i am needed to the client, a decision which in itself modulates the meaning response. terrible business but good healthcare. imho.

Words and defintions can make a difference depending on your audience. Our definition of Patient and Family Centred care is “The patient and family is at the heart of every decision: empowered to be equal partners in their care with their needs, preferences, and cultural beliefs valued”. This is reviewed at all levels from individual to organizational and system wide. Our goal is to include as many patient voices across our health region as possible.

What are the known and potential impacts on individual patients or groups of patients of our decisions and actions?

Patient Centered in this context is a general cultural and professional value where patients are the primary pivot point for whatever decisions are being made at various scales of health care … individual … groups … communities … nations … international.

Patient Centred questions shift the focus of decision making to the many trade-offs that inevitably arise between individual patients interests and the broader collective interests of groups of patients relating to resources, access, time, technology …. In other words, if we are NOT Patient Centred what becomes the primary focus for decisions …?

In other words, Patient Centred is a conviction that health care always begins and ends with the needs of patients … How Patient Centred Care is translated into day to day practice will be the perpetual challenge for anyone claiming to be associated with health care … whatever role they play.

Wouldn’t it be great if we all became more skilled at organizing our resources, time, technologies, policies, organizations … so they primarily focused on the needs of patients ?

Thank you for delving into this important topic. For us at Saint Elizabeth Health Care, patient-centred care is about taking a partnership approach, in which all parties (patients, family members, care team members, etc.) are recognized as bringing significant knowledge and expertise to the table. Through the person-centred care workshops we have developed, we stress how important communication and two-way sharing of information is to develop and maintain strong partnerships with the people for which we provide care. This allows us to find out what is “right” for a particular patient and family, through learning about their needs, preferences, values, and beliefs, as well as how actively involved in their care and decision-making they would like to be.

As the article points out, ethical dilemmas do arise when providing PCC, particularly when patients choose to engage in activities that place them at risk (e.g. patient at risk for falls choosing not to use a mobility aid) or make decisions about their care that are not aligned with clinical best practices (e.g. the family of a resident on a pureed diet bringing in solid foods from home for their loved one). These are situations our staff struggle with daily and we need to equip them with the tools to be able to respond appropriately to these difficult issues. In the workshops we have developed, there is an entire section devoted to discussing and working through these types of ethical dilemmas so we will be very interested in the ongoing insights that emerge through the Joint Centre for Bioethics and Healthy Debate partnership. We have found the Community Ethics Networks toolkit to be particularly useful to support staff with making ethical decisions in complex community care settings.

Its interesting that there even continues to be such a volume of debate, difference of opinion, and lack of understanding of the meaning of patient-centred care. After all, organizations like Planetree have been around for 35 years and thousands of individual health care professionals are following the practice. A vital question that needs to be answered is “Why are there so many different perspectives?”

There’s tons of models, examples, information and resources. The simplistic answer to the question is “the opposite of provider centric care”. And the simplistic method is to replace providing care “for or to patients” with providing care “with patients”.

The complex, not-so-simplistic, question that needs to be addressed is “why has our healthcare leadership avoided doing the things necessary so that our clinicians and administrators can actually implement patient-centred care on a broad scale?”.

Will our leadership simply pay lip service to these terms? In Ontario, the Premier’s mandate letter to the new Health Minister Eric Hoskins leads with a priority to “Putting Patients at the Centre”.

The Beryl Institute, a global community of practice focused on improving the patient experience in healthcare, where I’m Co-Chair of their Global Patient and Family Advisory Council, has published research that gives us important insights. The largest study of its kind examining hundreds of care institutions highlighted that where there was no unrelenting commitment to culture change from top management, institutions performed poorly. Where there was no designated management role responsible for this culture change, there was no transformation. Where there was no clear definition of the term, there is no common understanding, no capacity to develop strategy and choose tactics that are going to effect transformation.

Many of your issues I consider to be service delivery issues. What’s needed is an agreed set of principles that is mandated from the top echelon of our health leadership and shared across the continuum of care. This will provide the kind of guidance bioethicists and other providers need to deal with service delivery issues. And patients will know that regardless of where they are receiving care, whether on University Avenue or Sioux Lookout, their expectations for outcomes will be the same.

This initiative by Healthy Debate and the Joint Centre for Bioethics is commendable. You have a respected platform for dialogue and an opportunity to facilitate a conversation that can have a measurable impact on health outcomes. To be meaningful, it needs, at minimum:
– to demonstrate a commitment to patient-centredness, Healthy Debate and JCB need to include independent, expert patient(s) as collaborators and advisors on this project. And if you need a volunteer to kickstart this engagement I’ll put my hand up.
– to engage all the vital stakeholders in the conversation, including industry members
– to ensure healthcare leadership participation from all levels (policy, administration, education, research, public health etc)
– to define goals and outcomes, a clear purpose
– to set a specified timeframe

While you’re working out the details of your program, apply some reflective patient centred thinking that as you do so, patients across the country continue to suffer, in pain and anguish, fear and grief. We have a healthcare system that excels at preparing reports. Patients are prepared to engage in a good faith dialogue but are expecting more than talk. Patients will measure the success of this conversation with what counts – their pain and suffering – not the word count of a report.

At Accreditation Canada, patient-centred care means integrating patients (clients or residents) and families in the planning, delivery, and evaluation of services. To better reflect the principles of patient-and family-centred care (dignity and respect, information sharing, participation, collaboration), we have updated all standards. The revisions are designed to support health care and social service organizations – from home and community through to tertiary care – adopt procedures and practices that exemplify a patient- and family-centred approach to service delivery.

At the leadership level, patient-centred care might mean meaningful patient engagement on advisory councils, boards, and focus groups. At the service level, it is a direct partnership with each patient and their family, so that unique patient perspectives, values, and goals are understood and lead to more meaningful collaboration around care and treatment.

While the move toward patient-centred care will not come without challenges, research shows that effective collaboration with patients and families has many benefits. Satisfaction (of patients, families and the health care team) improves. Health outcomes improve. Resource allocation improves. There are many examples of successful implementation of patient and family-centred care principles across Canada and internationally, providing a powerful opportunity for knowledge transfer.

“Patient Centred care” is a much misused term. From my perspective the fundamental element of patient centred care is health professionals having the necessary conversations with the mentally capable patient or the incapable patients’ appropriate SDM. to getting an informed consent.

However from my work at ACE both with individual patients or SDMs, and from our educational work training and teaching health practitioners of various types about health care consent and advance care planning, I have found that many health practitioners and health facilities give lip service to both the legal requirement to get an informed consent and to “patient centred “care.

We have had cases where capable older patients are ignored and the health practitioners talk to family instead. We still meet health practitioners and health facilities staff that don’t know the basics of consent or the requirements in the Health Care Consent Act, and don’t understand the hierarchy of SDMs in the HCCA, often turning to the wrong SDM when the patient is incapable. We see forms in hospitals and other health facilities that refer to “next of kin” or “POA” rather than list the SDM hierarchy in the HCCA. This is despite the fact that the HCCA has been the LAW since 1996. Even the Rai tools used everywhere do not list the health decision makers correctly. This causes unnecessary confusion.

Great topic indeed. I am currently studying in the Faculty of Medicine at UBC on my way to becoming a Registered Midwife.

In Midwifery, one of the cornerstones of our care, that we are legally bound to as an ethical philosophy of care principle, is this notion of patient-centered care. In Midwifery, we refer to it, appropriately, as “woman-centered care” or often “client-centered”.

Our College mandates that Midwifery…” promotes decision-making as a shared responsibility between the woman, her family (as defined by the woman) and her caregivers. Midwives recognise women
as primary decision makers.”

Patient-centred care involves listening to and respecting the physical, mental, spiritual and practical needs of the individual patient. It is contextual and can vary according to the resources available. Fundamental qualities are teaching knowledge, decision-making, enabling self-evaluation, enabling self-regulation, participation, and empowering the patient and family as much as possible. It should not be used as an excuse for minimizing patient and family support. All patients should have access to mentoring and counseling. The patient’s confidence and empowerment can result in better health outcomes, so it benefits the patient, their family and society.

As you point out there are many definitions depending on the organization’s orientation to care. Interestingly I cannot find a definition from the Ontario MOHTLC. Does anyone know more? Many thanks. Mike

The Registered Nurses Association of Ontario (RNAO) in 2002 defines client centred care as:
“An approach in which clients are viewed as whole persons; it is not merely about delivering services where the client is located. Client centred care involves advocacy, empowerment, and respecting the client’s autonomy, voice, self-determination, and participation in decision-making.”http://rnao.ca/sites/rnao-ca/files/Client_Centred_Care.pdf
This seems pretty achievable to me. Kudos (again) to Doris Grinspun, President of RNAO for an early dedication to this subject. Almost 20 years later and we are still not in agreement!

I would like to see far less influence-peddling by professional advocacy groups and national associations that may fly under the radar of accountability. Unlike individual registrants of regulated health professions, associations have managed some slick words games in legislation that frees them from discipline as a consequence of misleading claims of benefit and effectiveness. This is a systemic problem that one could easily make the argument that these lobby groups may end up hurting our most vulnerable. One solution would involve steps towards more transparent application of bylaws that restrict language regardless of whether the source is individual or association; misleading is misleading, full-stop. Special interest groups are killing our healthcare efforts.

Ethical dilemma #2
I don’t see the situation as polarized between a patient’s request and doctor’s clinical judgement. Doctor and patient both would hope for her a better outcome than she has had to date, even if we think it unlikely. Allied in that. Good to make that clear at the outset. On the other hand, she’s pursuing off-label use of an available treatment approved (by Health Canada) only for other use (scurvy), and she should know that – regardless of whether I personally endorse it or not. Myself, I would ask to see the list of required tests. It is quite likely a number of the tests (CBC, creat/’lytes, LFTs, even calcium level) have been done regularly over the course of her chemotherapy, and it is her right to have copies of those tests, even to ask for them if not already forwarded to me by the cancer clinic. Also good for me to know if her creatinine is 400 already, as that might influence the strength of my recommendation not to pursue this line of treatment! Being patient centred, to me, means keeping things fairly pragmatic (vs principled) and being generally supportive where you can.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.